PAIN PAIN GO AWAY

Hi there...welcome to Healing Well..It's a wonderful group of people here who can really empathize what it is like to live with chronic pain. None of us are medical professionals so it's really just sharing our thoughts/suggestions for you to discuss with your Dr.

I have a few questions for you...

Is the Dr. saying he wants you to use a TENS unit? Or actually have the surgery to implant a Spinal Cord Stimulator?

Are you not on any type of actual neve pain medication like Cymbalta, Lyrica or Neurontin? It seems strange that if he is wanting to go straight to the SCS without trying to treat your nerve pain medicinally. Many people have great success with those type of meds in addition to other modalities.

All I can say is if it were me, I would never jump to getting the SCS without trying nerve pain meds first. As well as the TENS units are found inexpensively online (even used ones) can be very helpful.

If you have tried every single thing for nerve pain, then yes, seeing if the SCS can offer some relief is the next step. Just realize that you are going to get a skewed view online of the success rate of this unit as many people who are doing well, do not come to chronic pain boards to post! LOL..

The key is having a Dr. who realizes that the SCS is not some magic cure either...that many people still need medication and other treatments to help with their pain. So if your Dr. is saying once you get the stimulator, he is taking you off of everything else...I would be finding another DR. It's about realistic expectations.

We have quite a few members who have tried the SCS as well as have one now so I'm sure they will come on to share their stories.

Again, we are happy that you found us but sad that you are living with chronic pain:(

That's a very tough call to make on your part. You need your job to live, yet it sounds like your job is running you into the ground, with no guarantee that the SCS, or possibly finding a different career (which it sounds like you are going to have to do at some point), will help relieve the pain. It seems like you are on a very conservative medication dosage, have they talked about bumping it up at all? I won't compare what you are on to what I'm on, but it seems like they could certainly do more for you medicinally, I dont see why they have you on an IR medication, with such a drawn out interval, seems like you might have better functional benefit from a slow acting med, but I'm not your doctor, it just seems strange to me.

Gosh, 35, I just can't imagine why they are pushing for a spinal stimulator, when it seems like more can be done than that, I'm 28, and if someone came to me and said they wanted to put one in me, I'd look for another doctor, even 20 years from now, I'd still probably feel that way. Personally, I think your doctor is way out in left field, recommending that, without trying other forms of treatment, I would look for a second and third opinion, and be sure that there was no other way.

Well that's just my opinion, and I don't know your whole story, but I hope you are able to find some relief from that in whatever you choose. Take care, and God bless.

In my own case, I have never actually asked for stronger meds. I started a pain and medication journal at the advice that somebody gave to someone on here when I was still snooping around and not posting. I bought a little composition book that fits in my back pocket, and I make an entry any time there's a change in pain, and why, and how long that change lasts, so pretty much every morning's entry reads "woke up, pain at level 8 (sometimes 9) escalated to 10 when used restroom (I'm usually doubled over the counter by that point in tears) took pain medication (insert type and dosage here), pain slowly subsided to level 7 after *** minutes." That's my first entry in mine, with many similar entries, and many times not getting below an 8 for the whole day. I'd also log when the pain went back up, and what level, and what I was doing, what the pain felt like (it's the same pain always, so that one got kind of pointless), but also, how I reacted to it.

I still keep a pain journal, and when I have an appointment with my PM, I make copies for him, well her now, I just switched, and both have been very happy to put it in my chart. It gives them a form of evidence to justify with the DEA, giving you whatever regiment of medicine they're giving you. But more importantly, when I first started it, I was on 10/325 Norco, 1 to 2 every 6 hours, and this showed my PM, just how little effect the Norco was having on my pain, and just how much the pain was running every aspect of my life. When I showed my PM the journal, we immediately started working on something stronger, but he did it slowly, because at the time, I was still working, and really needed a clear mind to keep from injuring myself further (which endes up happening anyways lol, I hate drill presses).

Another thing I did, was to write down what my pain scale meant, based on my own life experiences, my 10 I equivocate to a bowl obstruction, my 9 is a femoral bone marrow draw. My 4 is cracked ribs. You get the idea. I gave my PM the idea that I'm no stranger to very real pain, they know certain conditions hurt badly, what they dont know is do you have an idea what a true 10 is. I had a co-worker who's 10 was a broken pinky, thats about a 3 on my pain scale.

Everyone has different experience, and experiences pain differently, when I was able to show the doctor exactly what I'm basing my pain levels on, he saw that, yeah, I'm a big wimp, but one who truly knows what that dreadful 10 is all about.

I believe a pain journal for you would be a valuable asset at your next PM appointment. It would give your doctor an in depth look at how effective your medication is, and for how long.

The other thing, is be brutally honest with the doctor, I have some things that are a little embarrassing to talk about, but they shoot my pain through the roof. Don't get bashful with the doctor, he needs to know the entire picture.

Also, if your current medication does help, I would let him know if it does, but also any inadequacy you might find with it. They had me on Nucynta 100 mg 4Xs a day, I let my PM know, hey this stuff works, but it only lasts for 3 hours at the most, of course I also let him know that particular medication was leaving me somewhere between spun out, and Never Never Land, so we needed a change.

I'm still sticking to my guns that I think this doctor is way overstepping some lines of morality by recommending such a drastic procedure with out trying other therapies first, like nerve blocks, and other conservative treatment, personally I'd think a fusion at the S1 level would be less drastic than a spinal stimulator, it may be that you do need to go back to an ortho, and get more things cleaned up. I dont know, and I dont know what's worse, but it seems to me that if they can remove a bulge and relieve some of the pain, they should go that route first. There are other members on here that are a lot more familiar with all this than me, so if I'm wrong, hopefully they'll pop in amd let me know, but I think that doctor is doing wrong by not trying to actually fix the problem.

I better stop rambling, I hope I helped in some way, if you need a translator call my brother, he's been translating me for years lol.

Heather
hi, pleased to meet you but sorry it is because of our pain issues.

I think Matt and Snowbunnynhave some very valid points, neurostimulator to me would be a last resort. One member here, I'm sure it is Shell, has just had one implanted but I think hers was after many other attempts at other modes of pain relief. The pain you talk about does seem to have a nerve related side to it. Your lyrica is at a very low level. The maximum dose is way higher than you are on. Now that you are taking lyrica, my feeling would be that increasing it wouldn't cause many side effects, if any. Usually it is the first weeks that re the worst.

If it was me, I would be doing what Matt suggested with the pain journal, and just ask what else would be on offer if you decided to give the neurostimulator a miss. If the doctor won't work with you on a less invasive form of pain relief, then I would be looking for another doctor. Have you had a recent scan done? Is surgery not an option at the moment. I think there are other avenues to explore before considering anything so drastic at your young age.

I hope you are able to speak to your doctor and are able to find some pain relief to help you cope and allow you to work. It sounds as though your work might not be helping either. May sound silly, but have you spoken to a physiotherapist just to make sure your work station is right for you. I know my husbands work had a physiotherapist come round looking at everything, seat height, desk height, wrist position (for carpal tunnel syndrome). New chairs were brought in, desks lifted on to blocks, special mouse pads for CTS etc etc, and it was amazing just how the staff benefitted.

Take care

Jane

Thank you to everyone for your replies advice and well wishes. I sent an email tp my PM dr to see what he will do about adjusting pain meds. I had to go to er again for pain delaudid and tordal shots. I hope they will last a few days. I decided not to get the stimulator. I am very worried about the effects it will have on me in the long run. Any advice on meds? I wk full time and am a full time mom. I dont want to be totally loopy but I want some type of relief.

Hi Heather, to be quite honest, I really wouldn't quite know where to start on the meds, I would think that increasing some frequency on the percocet would help some, but I really don't know that for a fact. I think the best thing you can do for yourself, is find a different PM. I think at the doses that you are at, and your PM has already recommended something so extreme, without actually trying to control your pain, I really don't think this doctor has your best interest in mind, or your health either, since such a device, if things went wrong, could leave you far more in a debilitated state than you are in right now.

If the PM is willing to work more with your meds, that would help while you find another. But I really think that this guy really crossed a line, and that should not be over looked, because it's your life, and your health, not his. I really hope you will start looking, I've only had to go to the ER one time with my PM, and it wasn't really for extra pain. I think your number of trips that are racking up, he should have done something by now with your medication, not just recommend a device that could leave you in a wheel chair.

I am so confused with my mri results it sounds like the protrusion isn't as bad as before but the pain is worse than it was when I had the initial mri (about a year ago). Today is one of those painful and numbing days. I have stretched took a percocet and homeopathic leg cramp relief pills. My PM hasn't responded to my email yet. I am fed up with the pain today. [img]

Matt, I don't know what you do for a living but thank you for taking the time to read and reply. You are a kind hearted informative person. I am waiting patiently dreading what lame answer my doctor is going to give me. I do have kids and enjoy watching them play. It does make you forget the pain.

Thank u for the info SB. He never explained that to me. Today is one of the worst in a long time. I am in so much pain. Its even in my shoulder blades lile hot needles. It feels like I slept wrong but it started when myback got worse. I tried to contact PM yesterday and they were done helping patients for the day. I feel stuck btwn rock n hard place because i dont want to "get in trouble" but i don't want to be in pain either. So grouchy and frustrated.

Did the stimulator help in the begining? I am sorry to hear you have such pain and so many meds. I keep telling doctor my nerve pain is getting bad and describe it and he says well let's see how xxx meds work. But doses are so low they don't do anything. I have an hmo and have to have referrals for everythiing so I just can't switchoctors. Do you do anything that helps give you any relief for nerve pain? Do u have sciatica?

Went to pm yesterday. Put me on fentenol (sp) patch 50mg evry 3 days. Aslo sending me to a neurosurgeon to get second opinion on mri results. Wants another mri on my neck because having a lot of pain and tingling in right arm and parts of my face on right side. Everything is happening to the right side of my body! Right shoulder swollen n sore like I have been playing volleyball. Sleep is a joke. I hope the patch helps. I feel like some progress is being made even if is slow.

Thanks for the update!...

I will just say to be very careful with the beginning weeks of taking this medication. Fentanyl is the strongest opiate there is. And going from 3 Percocet a day to 50mcgh is a very large jump in dosage. I am actually kind of shocked they would do this and not start with the 12mcgh then go from there....

Because it's not about comparing the numbers as Fentanyl is dosed in MICROgrams, not MILLIgrams like other opiates.

I ended up in the ER because my PCP when I first had pain back 11 years ago was trying to help me and we went from the same amount of Percocets to the 25mcgh patch (the 12 wasn't available then), and I took my regular hot shower and it released too much medication into my system...Even without the hot shower...it was just too much medication for me...

So...the patch can be very effective for pain and when used properly (just read the warnings about being in the sun, hot showers, etc.). So not trying to scare you...just sharing my thoughts.

Good luck...